side effects from TAMOXIFEN

momruns325
momruns325 Member Posts: 4
edited March 2014 in Breast Cancer #1
hello all, has anyone out there had any of the following side effects from tamoxifen: muscle and joint pain, neuropathy and fatigue? i have been on tamoxifen for 2 years and over the course of treatment have been developing these symptoms. the pain eventually became agonizing. none of my doctors related my symptoms to tamoxifen and as a result i was scanned multiple times including a bone scan, many MRI's and 2 PET scans. i stopped taking tamoxifen memorial day and almost all of my side effects began to go away. i was 97% improved BUT my oncologist is adament that i continue. so i started back on tamoxifen last week (after not taking anything for 5 weeks) and all these symptoms are returning. i am aware that these symptoms are reportes with the AI drugs, but not tamoxifen. is anyone out there experiencing what i am experiencing??? gmc

Comments

  • cabbott
    cabbott Member Posts: 1,039 Member
    #2
    I checked a couple of websites that review the effects of tamoxifen. All of them mentioned that sometimes tamoxifen caused women to experience bone, muscle or joint pain. Usually this pain disappeared after continued used and was associated with good tumor response. Pain meds like Tylenol were suggested to treat the pain. However, life is too short to take a medicine that makes you totally miserable. And cancer is too risky to not take anything if you are at high risk. It sounds like you need to talk with a breast cancer oncologist specialist and go over what kind of cancer you have, what treatments might work as well or better than tamoxifen, and see what your options are. Some of those options not suit either, but at least you would have an idea of what else you could do. I am on exemestane (an aromatase inhibitor). I get joint pain from it, but the nurse practitioner had me tested for vitamin D deficiency. Treatment with prescription vitamin D worked pretty well, though the over-the-counter stuff is not working quite as well. If that worked with the tamoxifen, it would be a cheap and easy fix: one blood test and then one pill a week if you are on the prescription vit. D. Good luck!
  • momruns325
    momruns325 Member Posts: 4
    #3
    cabbott said:

    I checked a couple of websites that review the effects of tamoxifen. All of them mentioned that sometimes tamoxifen caused women to experience bone, muscle or joint pain. Usually this pain disappeared after continued used and was associated with good tumor response. Pain meds like Tylenol were suggested to treat the pain. However, life is too short to take a medicine that makes you totally miserable. And cancer is too risky to not take anything if you are at high risk. It sounds like you need to talk with a breast cancer oncologist specialist and go over what kind of cancer you have, what treatments might work as well or better than tamoxifen, and see what your options are. Some of those options not suit either, but at least you would have an idea of what else you could do. I am on exemestane (an aromatase inhibitor). I get joint pain from it, but the nurse practitioner had me tested for vitamin D deficiency. Treatment with prescription vitamin D worked pretty well, though the over-the-counter stuff is not working quite as well. If that worked with the tamoxifen, it would be a cheap and easy fix: one blood test and then one pill a week if you are on the prescription vit. D. Good luck!

    yes, i was tested for vitamin D deficiency and i was given vitamin D too. that did not help. unfortunately, the side effects i'm experiencing got worse after being on tamoxifen for awhile. they did not get better after time. in fact, when i was at the peak of pain, my oncologist tested my blood to see if i was post menopausal yet, and i was, and he switched me to aromasin. i took aromasin for two months and my symptoms increased 100 fold. i remember feeling that i'd rather take chemo again than suffer the side effects of these drugs. that's when, on memorial day, i decided to stop everything. now i'm back on tamoxifen hoping i can tolerate it better, but these symptoms are returning and i've only been on it one week now. i don't want to have to stop again, but the pain is miserable. and, by the way, motrin, medrol dose packs, and epidurals did not stop the side effects. i went for physical therapy, saw a chiropractor, rheumatologist, anesthesiologist, physiatrist, orthopod and nothing helped. i was ready to see a shrink before i realized what i was experiencing were side effects from tamoxifen and then aromasin.
  • Unknown
    Unknown
    #4
    momruns325 said:

    yes, i was tested for vitamin D deficiency and i was given vitamin D too. that did not help. unfortunately, the side effects i'm experiencing got worse after being on tamoxifen for awhile. they did not get better after time. in fact, when i was at the peak of pain, my oncologist tested my blood to see if i was post menopausal yet, and i was, and he switched me to aromasin. i took aromasin for two months and my symptoms increased 100 fold. i remember feeling that i'd rather take chemo again than suffer the side effects of these drugs. that's when, on memorial day, i decided to stop everything. now i'm back on tamoxifen hoping i can tolerate it better, but these symptoms are returning and i've only been on it one week now. i don't want to have to stop again, but the pain is miserable. and, by the way, motrin, medrol dose packs, and epidurals did not stop the side effects. i went for physical therapy, saw a chiropractor, rheumatologist, anesthesiologist, physiatrist, orthopod and nothing helped. i was ready to see a shrink before i realized what i was experiencing were side effects from tamoxifen and then aromasin.

    I am certainly no doctor, but I am concerned that your doctor is switching you around from Tamoxifin to Aromasin and back to Tamoxifin. I understood that they are not interchangeabler across the "change of life" divide because they either address estrogen being released from the ovaries (pre) or being manufactured in muscles (post). Would you consider getting a second opinion? Anyone else out there understand it this way? As I say, I am not educated enough to say anything for sure...except I hope you find a quick answer! love, JOyce
  • cabbott
    cabbott Member Posts: 1,039 Member
    #5
    unknown said:

    I am certainly no doctor, but I am concerned that your doctor is switching you around from Tamoxifin to Aromasin and back to Tamoxifin. I understood that they are not interchangeabler across the "change of life" divide because they either address estrogen being released from the ovaries (pre) or being manufactured in muscles (post). Would you consider getting a second opinion? Anyone else out there understand it this way? As I say, I am not educated enough to say anything for sure...except I hope you find a quick answer! love, JOyce

    When you are post-menapausal you can take either drug. When you are pre-menapausal you can take only the tamoxifen. The aromatase inhibitors work 50% better than the tamoxifen which is 50% better than nothing. For me at stage 1 with a non-aggressive looking breast cancer, I had a 90% chance of making it 5 years with nothing. Tamoxifen made it a 95% chance of making it to 5 years, and the exemestane(an aromatase inhibitor) made it 97.5% chance of making it to 5 years. I'm 5 years now(yippee!), so we are working on the ten year statistics now. I get foot pain, somewhat reduced by the vitamin D, but I'm still wearing the orthodics and toe splints the podiatrist gave me so that I can stay on the exemestane and keep walking okay. My balance is worse than when I started and I exercise every day at least one hour. For me the pain is tolerable and popping an ibruprofen now and then gets me through 3 mile hiking woes (always problematic the day after but don't tell me to stop!). Even though I choose to take this drug for a possibly 2.5% better outcome, I know I could possibly do just fine without it. Are your odds such as you could go without anything in your opinion?
  • Unknown
    Unknown
    #6
    Sorry, wish I could help. Im taking tamoxifen, but side effects are mostly hot flashes and weight gain. Hang in there. Wish I had some ideas.....Keep us posted. Eil
  • noelleon
    noelleon Member Posts: 2
    #7
    Hi - I have been on taxoxifen for 6 months. I have hot flashes/night sweats and lower muscle/back pain.

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